On behalf of the ERCAL Initiative Steering Committee, we are ready to continue the discussions initiated in 2020. We are scheduling country-specific discussions of rare diseases activities in the region following this suggested Template of Rare Disease Related Issues to be Discussed for Each Country

  1. Status of Existing Legislation and Policies in Your Country
  2. Current National Activities and Areas of Emphasis
  3. Challenges, Barriers, or Obstacles to Needs in the Rare Diseases Community
  4. Legislative or Policy Needs in Research, Regulatory, or Healthcare Services
  5. Opportunities for Future Collaboration
  6. Suggested Activities for Country, Region, or a Sustainable ERCAL

Session 12 · August 12, 2021

Video

Presentation: Licda. Clarivel Castillo Barrientos Rett (Guatemala)

Presentation: Dra. Migdalia Denis (LATAM)

Presentation: Dra. Patricia Lucki – Angel Asociación (Guatemala) – Versión en español

Presentation: Dra. Patricia Lucki – Angel Association (Guatemala) – English version

Session 11 · August 2, 2021

Video

Presentation: Dra. Maria Luara Baz & Lic. Ana Fernandez (Venezuela) · English version

Presentation: Dra. Maria Luara Baz & Lic. Ana Fernandez (Venezuela) · Spanish version

Presentation: Dr. Francisco Javier Conectiva

Presentation: Dra. Maitte Hernandez (Venezuela)

Session 10 · July 20th, 2021

Video

Presentation: FIDEP (Bolivia)

Presentation: Dra. Beatriz Luna (Bolivia)

Presentation: Dr. Alberto Santiago Cornier (Puerto Rico)

Session 9 · July 7, 2021

Video
Dr. Honna L. Silfa (República Dominicana)
Dr. Lindsay Antonia Borjas Aguilar (Honduras)

Presentation: Dr. Honna L. Silfa (República Dominicana)

Presentation: Dr. Lindsay Antonia Borjas Aguilar (Honduras)

Session 8 · June 22, 2021

Video – Dr. Gerardo Mejia (Nicaragua)

Presentation: Dr. Gerardo Mejia (Nicaragua)

Presentation: Dr. Víctor Raggio (Uruguay)

Session 7 · June 8, 2021

Video – Dr. Carlos Salazar-Vargas; Nancy Elena Rivas (Costa Rica)

Dr. Carlos Salazar-Vargas
(Costa Rica)
Presentation

Nancy Elena Rivas
(Costa Rica)
Presentation

Session 6 · May, 25, 2021

Video – Dr. Marta Ascurra (Paraguay); Dr. Claudia Gonzaga-Jáureui (Mexico)

Video – Dr. David Peña (Mexico)

Dr. Claudia Gonzaga-Jáuregui (Mexico)Presentation

Dr. David Peña (Mexico)Presentation

Dr. Marta Ascurra (Paraguay)Presentation

Session 5 · May, 11, 2021

Video – Cecilia Bonilla, Milagros Dueñas & Mario Cornejo, from Peru

Dr. Claudia Gonzaga-Jáuregui (Mexico)Presentation

Cecilia Bonilla, Milagros Dueñas & Mario Cornejo (Peru)
English version
Presentation

Session 4 · April 27, 2021

Video
(The presentation starts in the min 12 of this video)

Cecilia Rodríguez (Chile)Presentation

Gabriela Repetto (Chile)Presentation

Arianne Llamos (Ecuador)Presentation

Eliecer Quisoe (Ecuador)Presentation

Session 3 · Rare Diseases in Brazil – April 13, 2021

Video – Roberto Giugliani and Ariadne Dias

Ariadne DiasPresentation

Roberto GiuglianiPresentation

Session 2 · March 30, 2021

Video – Joana Mendivelso

Video – Luis Alejandro Barrera

Video – Sylvia Hafez and Linda Díaz

Joana MendivelsoPresentation

Luis Alejandro BarreraPresentation

Sylvia Hafez and Linda DíazPresentation

Session 1 · March 16, 2021

Video

Dr. Steve GroftPresentation

Dr. Emilio Roldan / Ana Maria FortePresentation